Rocket Blast-Off

Today was a day I had long looked forward to. The medical supply company came, and took away Maddie’s oxygen tank (aka the Oxygen Rocket).

But it wasn’t joyful. I couldn’t be home when the man came to pick it up. I couldn’t even call to SCHEDULE the pick up, Mike had to do it. My wonderful mom sat in our apartment while Mike, Rigby, and I went for a short walk. When we came back, the rocket was gone. She said the pick-up guy was devastated. Join the club.

Madeline COULD. NOT. STAND. wearing a cannula. I couldn’t blame her. The prongs were long and went far up her nose. Who wants that? Plus the tape that held the tubing in place irritated her delicate skin.

Considering how much Maddie and I hated the rocket, it sure was hard to let it go.

Because Maddie had become an active tumbling toddler in her sleep, we’d moved the rocket from her room to next to my side of our bed. That way, I could sleep slightly easier knowing that I was right there should she get tangled in the oxygen cannula that tethered her to the rocket. Of course, being super-paranoid, I was usually awake all night when she was on oxygen. Maddie would sleep in between Mike and me, and her cannula would lay across my body.

Now there is an empty spot in our bed AND an empty spot in our room. To say nothing about the empty spots in my arms, my life, and my heart.

182 Comments

JT says:

Jaclyn says:

I find myself coming back to your blog, day after day sometimes more than once in a day. Having followed for some time I know we would totally have been friends. So, even though we dont know eachother, I think of you daily and of Maddie too. I know it had to be hard to get rid of the tank. I am a nurse, just took a patient up to the floor on oxygen and all I could think of on the walk was you and Maddie. Hang in there. You are in my thoughts and prayers.

Kelly says:

Heather, what you and Mike are enduring right now – every moment of every day – is the worst nightmare of any parent. I’ve been reading your blog & checking for updates a bit obsessively, I must admit, ever since I heard the sad news about Maddie. I just want you to know that I admire you for your courage and honesty in these darkest hours of your life. Your love for Maddie is infinite and beautiful and undying. May you find peace and healing in this process of sharing your life with others. Thank you from the bottom of my heart!

Melissa says:

I dont’ know you and you don’t know me, but I have been reading your blog for a short time (both the history and current postings). My heart just aches for you and your family and your beautiful, beautiful little girl. I also had preemies (my son was born 12 weeks early) so I understand the fear, excitement, confusion, frustration and all the rest that goes along with bedrest before the baby as well as having a preemie in the NICU. Though I started reading your blog after Maddie passed away, I celebrated with you in you blog when she came home from the hospital. I wish there was something I could do or say that would take away your pain. I can’t even imagine how deep the hurt goes. Please know you and your family are in my prayers.

I can totally understand why it was hard to let go of the tank, no matter how much you hated having it in your home in the first place. It symbolized Maddie – so it’s completely understandable why you wouldn’t want to let it go. Your mom is great for being there so you guys wouldn’t have to. xo from CT

Anna Marie Hinnant says:

Amy says:

I can only imagine how you treasure each and every one of Maddie’s precious things, and how losing any one of them would be extremely difficult, to say the least. I’m so so sorry for your loss. I think of Maddie, you and Mike so often. I’ve shared your story with so many others…as a matter of fact I was telling another mom about your sweet Maddie which led to both of crying poolside. Just know that people are still thinking and talking about your sweet, adorable little girl all across the country…and we always will. I will never forget her. My heart aches for all of you.

Karen says:

The most cruel part of losing someone you love – but especially a child – is having to figure out what to do with what’s left behind and try to cope with harsh and bitter reminders of your loss especially when and where you least expect it. I wish there were some way we could all insulate you from experiencing any of it. I wish there were something I could say or do to make those empty places feel full for you again. This pain and struggle is one that no parents should endure. May peace be with you soon my friend.

Christina says:

Your devasting loss happened just after my infant son gave us a scare and had to go for immediate brain surgery at sick kids hospital here in canada. Scariest days of my life, but they ended so well with everything fine. I cannot imagine how you feel. All my worst fears of those days collided with your post about the passing of your daughter. She was beautiful and in a fair world, you would still be holding her in your arms. Words cannot take your pain away, but I believe you were truly blessed to have her for even her short amount of time here on earth. My deepest condolences.

Heather and Mike, what are enduring right now – every moment of every day – is the worst nightmare any parent can ever have. There is something unnatural about burying a child. I know, I did it almost 3 years ago and it breaks my heart that you are having to do this now. My prayer for you is that with time, your memories of joyful times overtake this saddness that you now feel and that your pain will dull. There are really no words to be found to say to you. What does one say? How can you describe the vast span of emotions & thoughts filling us, strangers, in contrast to what each day brings you, her parents, since Maddie died? In days to come, some days the strength will be there & the smiles and laughs will be genuine. Other days, you will blindsided with paralyzing grief & a heaviness that reduces you to nothing but tears & longing for what you cannot get back this side of Heaven. And the days in between fill with a mixture of everything between. Through it all, one thing will be a constant steady: the real absence of that sweet little blue eyed girl & the ever-presence of God’s love & comfort. It is OK to be hurting, but one day at a time, you will make it through. May your Maddie’s touch on the world never be forgotten as she continues to make an impact of people, complete strangers, and on those little babies who will forever be helped from Maddie and her March of Dimes impact.

Dana says:

Boy this is so incredibly heartbreaking..I know this is a wasted emotion but I’m angry for you….angry and sad that you are having to go thru this…Nothing we say is going to lessen the pain you both are feeling…Just know that we are here supporting you and missing Maddie too… I even had a dream about her last night…She was happy and smiling! I woke up with a smile on my face because of Maddie…She will ALWAYS have a positive “touch” on everyone…Hugs..
Dana

It is so unfair. Not just that you lost such a sweet little girl, but that now you have to face these small things that just keep reminding you. I think about your family every day and I hope you are able to find comfort, at some points, some days. To wish I could take away the pain of someone I’ve never met…All I can think is it just sucks. And you are so strong. You keep speaking and sharing and I don’t know how you do it, but I admire you so much for doing it.

I am so sorry … I know I keep saying that but really I have NO OTHER words, I feel like I can’t look away and I don’t kow why. I check for a new post several times a day … I feel like if there is a new post that I will be able to readjust my prayers and thoughts. I feel like if there is a new post that you are making it … another minute, another hour and then another day. I cna’t imagine what you are feeling and I just want my prayers and thoughts to take away some of that.

I will continue praying and worrying hugs and prayers to you and mike!

Stephanie says:

Every day I read your blog and my heart aches for you. I want to reach out to you and your family to offer you comfort, support, strength… and most days I am at a loss for words. My family loves you and is praying for you. God will bring you through this and while there will always be a hole in your life I am praying that it won’t be as painful.

No matter how much you hated that thing it was part of Maddie’s life so it is totally understandable that you had a hard time letting it go. Hold onto the good parts of her life, her smile, her laughter, her toys, her joy for life. I can’t begin to imagine how you feel, but I think about you every day and wish I could in some way take away a little bit of the pain.

Mer says:

I think about Maddie all the time too. I have a purple shirt on today and as I ironed it for work, I thought of her. I am just so incredibly sorry that are going through this, and that your precious baby girl is gone.

Emily Patterson says:

Like everyone else, there are no words and no pretending I know what you both are going through. Try to lean on each other as much as you can and learn how to live again together. Please remember a quote, “A heart can be broken, but it will keep on beating just the same.” When life begins to creep forward, try not to feel guilty. Maddie would want her parents to try and live once again. And please keep on taking those beautilful pictures. Photography can sometimes lead to mending wounds.
Peace,
Emily

annie says:

Letting go is part of the healing process but it’s not the pretty part. Perhaps you don’t want to heal right now and that’s okay too. You just have to feel what you feel until you don’t feel something else. I’m so glad to see you writing and reaching out, that will help immensely and one day you will smile. In the meantime, I’m thinking of you often and holding your family in my heart. After seeing so many pictures of Maddie, I dreamed of her last night and she was happy and healthy and smiling. I’m hugging my children tighter these days, taking more pictures and praying for you.

Danes says:

Marie says:

Heather,
I stumbled across your blog when another blogger I read requested prayers for Maddie. Since then, I have been riveted to your posts, and have been reading your story. I am so saddened by your loss. It’s odd to say my heart breaks for you since I don’t even know you – but after reading so many of your posts, I feel like I do. My son was born 15 weeks early last March, so I know how raising a preemie is, with all of the developmental testing and checkups and visits with every kind of doctor imaginable. What I can’t begin to imagine is how it must feel to have made it through many tough times and now to be dealing with Maddie’s loss. When we hit the 1 year mark, I breathed a little sigh of relief at having made it through his first year – but your experience reminds me daily not to take anything for granted. Thank you for giving me that. I know you must be so proud of Maddie and the joy she brought to so many people, near and far, known and unknown. My husband and I are walking in our local March of Dimes walk on Sunday, and will have you and Mike and Maddie in our hearts.

I’ve read you for quite some time and in an effort to, I don’t know, stay close somehow, I’ve been reading your archives. You and Mike are amazing parents and it’s so obvious how much you loved Maddie Moo and totally devoted yourselves to her. This is so unfair and painful and I hate that you’re going through it. I think of you often and think of Maddie EVERY time I see purple. Hugs.

Curling up in bed for some cave time is good. It’s not easy to walk around with a hole in your heart. Curl up and cry, cry for Maddie.
It’s utterly frustrating to not have words to really comfort you and your family… How could there be?

I’m so glad you & Mike didn’t stay in the apartment when they came to take the oxygen rocket away. There was no need for you to watch it leave your home. I get the attachment to it, even though you hated it – it was there to help Maddie. Letting it go means taking one more tiny step toward acknowledging that she’s really gone.

Still sending lots of prayers and Internet hugs from our end of the world.

Suzanne says:

I’m crying for you. I wish this was not happening — it is just the worst, crappiest, shittiest thing. Your account of dealing with the mundane details of life — without Maddie — is devastating. I am so, so sorry. I would have been so sad to see that damn rocket go too.

I’m thinking of Maddie all the time, and sending you guys my best wishes from DC.

Tamara says:

There’s so much that I wish I knew how to say to you. All I can really come up with is that I am so sorry and that your beautiful daughter’s memory will go on through the many of us out here in cyber world.

I’m so sorry, I can’t even imagine. Well, yes I can imagine and I’m so sorry. I don’t know what to say but I think about you often and your beautiful daughter. God bless you all; she is an angel, that is for sure. There is no other explanation…

I can’t imagine how hard these daily, heart wrenching reminders must be to endure. This morning I looked at my sons’ windowsill full of asthma treatments and tried to imagine having only the meds, without the children, and my heart broke for you all over again. I hope writing about your struggle and about Maddie is therapeutic and helps in some way.

Veronica says:

My heart is with you and your family at this time of loss and grief. What a beautiful and wonderful little girl. A true angel on Earth. I wish I could make it easier for you, so I will keep you in my prayers an thoughts. All of the best to you and your family and hope for the future.

Nicole says:

I wish there were words or SOMETHING that could help ease your pain. I am just so so sorry. My heart breaks reading your words. Your sweet Maddie has touched my life, and the lives of so many, in so many ways. We’re walking this weekend for MOD, we were regardless because of my preemie daughter, but I, as well as my daughter, will be wearing purple to honor your Maddie. I pray for you both and your on my mind daily.

Our stories are so similar. My water broke at 23 weeks, my son was born at 29 wks. I heard of Maddie’s passing through the internet and I’ve been following your posts since. I can’t tell you how deeply your loss has touched me. I am so sorry that all of this has happened. I think of you and your family so often.

Maeve says:

Oh, Heather. I think of you and Mike every day, and cry for you, and wish like so many of us out here in the internet that I could carry some of your pain for you so you can rest. This will get much, much harder before it gets easier, but we will be here praying for you every step of the way. She was the most beautiful baby I’ve ever seen.

Colleen says:

Thanks for writing your blog, I check it often and think of Maddie almost daily. I tell her (your) story often and am still in shock. I will always remember your baby
with her fab eyes and darling toothy smile – I will think of her as in that last picture you took. Good luck, I am pulling for you both.

Trish says:

Amy Franks says:

I am so sorry for your loss. I can’t help but think of Ivan Karamazov, when he says in Dostoevsky’s novel that, more than anything else, the death of a child makes him want to give back his ticket to the universe. I feel that way too when looking at the photos of your brilliant girl. But I am glad that you are surrounded by the love and support of friends and strangers, and I admire your courage to hold onto your ticket in the face of such unfathomable sadness.

Kristen says:

This post reminded me of the fact that my Maddy’s identity was purely medical. I only had six days of drugs and tubes and terminology followed by a year and a half of tests and biologically-laced arguments. On the one hand, I loved it when a specialist called because they used her name — it was like we were having a discussion about her. On the other, I despised it. She was supposed to be so much more than machines-that-go-ping. Letting all of that go meant letting her go, too.

tara says:

my heart breaks into a million pieces for you every day. i see purple everywhere i look now, and i am always thinking about your beautiful, amazing daughter. you and mike and maddie are in my thoughts every day.

Jodi and I have Morgan sleep inbetween us for the same reason Maddie slept between you and Mike. I feel comfort knowing that he’s there with the oxygen running. I look forward to the day it goes away…but not as much now. I’ll just keep hugging him and we’ll keep sending our love to you and your husband.

Alexandra says:

My gosh, your poor heart. All these mundane things making your loss so real. All these things being taken away, saying “she’s really gone.” I pray for you. I pray that you believe you WILL see Maddie again. You will. Believe me. That sweet day will come…it truly will. And what a reunion it will be!!!!! I pray Maddie visits you in your dreams, so you know she is always with you.

april says:

Like someone said… I wish we were “real” friends b/c I’d give you the biggest hug. I too check your blog obsessively… hoping to hear something that shows me that you’re making it through this suckdom that is life right now. We all love you and Maddie and pray for your entire family!

Tina Hosko says:

Krissa says:

The first two sentences of this entry almost broke my heart because I *thought* I knew the pain that was to follow. If only it were so – but it was even deeper… I should have known. I have been trying to think of a “comment” and can not come up with anything, but I don’t want to say nothing because I am so moved….. I am so very sorry for your loss. And words are not enough. Maddie is remembered and cherished around the world with love … and you are in all our thoughts and hearts. Sending this with care and love to you and your family and friends.

Cory says:

I have been reading your blog for a long time now, and I can’t even remember how I got here, actually. I think maybe from Stefanie? The day I clicked on your blog and saw the sad news, I was at work and had to excuse myself to cry my eyes out in the restroom. I was in a horrible mood that evening and tried to explain to my husband why I was a wreck, but it’s hard to explain to people why you are greiving so hard for people you’ve never met before. But from reading your blog, I’m sure thousands of us feel as though we know you very well. My heart breaks for you both and I have thought about your family every day since Maddie’s passing. Please know that it has taught me to be more patient with my 6 year old (also a Maddy), and 2 year old, and to kiss them and hug them a little harder each day and not take their health for granted. This is every mother and father’s worst nightmare and I’m so sorry that you and Mike have to endure this. My thoughts and prayers will be with you…

Just keep writing. It doesn’t have to make sense or be perfect, and you don’t have to explain anything. If you can, take pictures. They, too, don’t have to make sense or be perfect or explained. I’m not suggesting these as distractions to make you feel “better” – but maybe as a way to just Be right now.

Not a day since April 7th has gone by that I haven’t thought of you and Maddie. You are an amazing mother to her.

Amy says:

What a bittersweet ending to the oxygen rocket. You, Mike and Maddie should all be CELEBRATING its departure together. We should be throwing a party for Maddie because its gone, not grieving its departure along with Maddie’s. Its not fair. Who would have thought that seeing the rocket leaving would be so hard.
I wish Maddie were here with you, in your arms, in your bed, oxygen rocket and despised cannula and all.

Again, there is nothing I can say to ease your pain, but I still have to leave a comment. I cry everyday when I read your posts, but I am glad you are blogging. I know it will help you work through this horrible loss. When my grandmother lost my mom she said it took eight years not to think of her every single moment of every single day….that stuck with me. I would think of her too, but I was so young it didn’t affect me as bad as a mom losing her child. It’s something a mother should never have to experience. We have been through such rough times this past year and a half since Jude’s stroke in utero, but Maddie has taught me to hug him tighter! She also inspired us to get involved in March of Babies. In addition to that my ten year old daughter is starting a charity where she drops off care packages to the Dallas childrens hospital. My daughter decided to name her charity “Emily’s smile boxes”. So even in death Maddie is spreading smiles!!!!!!

Jackie says:

Heather, I was so worried you wouldn’t be back. Thank you for continuing to share your thoughts with us and allowing us to grieve with you. There isn’t a moment that goes by that I don’t think about Maddie, you, and Mike. I’m so glad Rigby is there to snuggle with you – it’s not the same, it’ll never be the same – but she’s there for you to hold when you need. Much love to you.

Liz says:

I’m so sorry for this. The Lord certainly answers prayers His way. I’m sure you (and Maddie) couldn’t wait for the day that you didn’t need that tank anymore. This is not the way you or anyone else had ever pictured.

Shelley says:

My heart aches for you everyday. I wake up thinking of Maddie and her sunny smile and I go to bed praying for your family. I wish I could do so much more. Take one moment at a time and remember how happy you made her.

JustAMom says:

I’m just another stranger at a loss for words…….. I don’t know what to say, but I can’t not say anything…… thank you for sharing your darling girl with us. Her life made a difference…… since I started reading your blog, I look at my own daughter and think of all the times I told her Mommy is too busy….. Mommy needs to right now. How many times have I told a girlfriend “oh this kid is driving me nuts today?” I haven’t done that since I found your blog. Now I think of you and your Maddie, and I thank God she’s here to follow me around and mess up the laundry I already folded and spill her milk and play with the cat’s food.

I’m a better mother now because of your Maddie. I’m so sorry it took her passing to remind me to cherish every day with my own baby.

I’m so sad that we can’t make the drive from AZ to CA to participate in Maddie’s walk this weekend…So today at work they were giving away trees for Earth Day and what a great way to turn it into my own Maddie’s Day on Saturday. We’re going to plant the tree in our backyard in honor of Maddie.. I will be there in spirit with you all..

Yet another comment from a person “who doesn’t know you” but feels so much like I do. My heart is broken into what feels like a thousand pieces for both you and Mike. I like many many others think of your precious Maddie daily and am soo sorry for you loss! I want to thank you for sharing your daughters life with us. Because of you I am a better mother today. I have realized that I have taken my little girl and her health for granted, and to you I apologize for that!

(another) karen says:

still thinking of you and your family constantly. there are no words, so i won’t go on. but know that yet another stranger out there has all of you in her thoughts and is wishing you all peace and comfort.

hello, dear Spohr family… I came to your blog via Matt Logelin’s, who wrote about your daughter’s passing. it is absolutely astounding, how a complete stranger’s story can touch one’s life so profoundly. having a little daughter myself, I find myself imagining what it must be like to lose her, the dearest person to my heart – and my heart is shattering into a million pieces, when I think that ANYBODY has to go through what you had to experience. I now find myself thinking about your beautiful Maddie daily, thinking about the two of you daily, wondering from the bottom of my heart where you find the strength to go on.

I wanted to step up and thank you for writing about your daughter, and sharing with the internet community. your experience humbles me, makes me appreciate my beautiful and healthy daughter even more, makes me extremely thankful for every second I get to enjoy with her, for I realize that not one of them is to be taken for granted. I enjoy my time with her a lot more consciously now, I soak up her presence with every fiber of my being, I am more forgiving when she “acts up”, I am giving her a lot of “extra” love whenever I can. when I put her to bed at night, I hold her for just a bit longer, hug her just a little tighter, touch her cheek just one more time before leaving the room. and while I do, I send a thought out to Maddie and the two of you. I really do. your Maddie is turning me into a better, more conscious mother. I thank her and you for that with all my heart.

Glenda says:

Sarah says:

We are so sorry for your loss. I read some of blog to my husband last night, telling him that there is just something about your writing that pulls me in… I sat on my couch with tears pouring down my face for an hour reading over your hearbreaking words. Though I have never met you, please know that I and everyone reading feel and share a fraction of your pain. It is my hope that us sharing your pain will help lessen it even the slightest.
G-d Bless You

Misty says:

My heart hurts for you. I have too have a baby girl and to lose her would be unbearable. I am having a hard time typing through the tears running down my face right now. I have said many prayers on your behalf and will continue to do so. Thank you for sharing Sweet Maddie with the world….

Maddie’s Family:
My heart phycially hearts for you, yet I know I couldn’t even BEGIN to imagine the depth of your pain. I feel so fortunate that with my insane children, the most I’ve had to deal with in the past week is the dare devil Violet pulling acrobatic stunts off the “bonk bed” ending up with a broken nose and cheeks, and another crazy kid with Grade 1 kidney reflux. I never thought I’d be thankful for such things, but I am. Your precious Maddie has made me rethink, yet again, the important things in life. Lots of love and prayers are being sent your way from our little corner of the earth.

Your story has touched me ever since someone posted it up on a card making group and I’ve read every entry and felt every pain you’ve felt. I went through something similar to this and know with every bone in my body what you are going through and am sending you hugs over the great Pacific Ocean.
Maddie is such a beautiful baby, I can see it in here eyes and both you and Mike’s, what a gift she is to you and to everyone of us who read your blog.
May you feel at peace to enjoy every moment you had with her.

Katie says:

I stumbled upon your blog a couple weeks ago and have been reading about you and your precious little girl. When I saw that she had passed away I was so sad. I cried when I watched your tribute video to her. I think of you and her everyday, and check your blog often. I cannot imagine the pain you must be feeling and I am praying for you. If it means anything, her death makes me realize that it is a privledge to be a mother and even though my girls make me crazy some days they are blessings from God and I should be thankful for every moment I have with them.

I am glad you were out of the house when they came to retrieve the rocket. No need to add more grief and sorrow to your plate. I am going to post on Mike’s blog today, because I have some advise on what to do with Maddie’s belongings.

I am hopeful today that you have made it through another day. One minute, one hour at a time, seems like we hurry up and wait for what? For the strength to know the next step to take in your grieving process. Sometimes those answers take a long time coming. It is ok, you are in no rush! Hugs to you sweet friend.

Yolanda says:

I wish the oxygen rocket could have parted terms under happier circumstances. I’m so sorry you have to go through this. It is incredible to see how many lives and hearts Maddie and your family touched. She accomplished a whole lot in a very short time.

I’m so glad that you are writing and letting us share just a tiny bit of the pain that these days are bringing you. I don’t know if it is lessening the burden one bit, but I am listening to every word and thinking of you and Maddie and Mike every day.

I am so sorry for your loss. Losing a child is the most unfair and horrible thing a parent can have to endure. Unfortunately, I know this from firsthand experience. You will find a way to adjust to your new reality; your new life that you never would have chosen for yourself. It sucks and it hurts like an SOB. I lost my son 5 1/2 months ago and my heart and arms still ache for him. The first few days were by far the worst, there were reminders of what my life should have been everywhere I looked. Reminders of him. Reminders of the happy days. But slowly the pain gets a little more manageable (for the most part) and the tears don’t just randomly start streaming down my face (for the most part).

From one grieving mother to another I wish you strength, peace, and love in the coming days, months and years.

Alexicographer says:

I am sooooo sorry for your loss! I too have a baby in heaven…maybe it can play with your precious little one. My brother-in-law, as he was traveling heavenward, said he got to meet my little one and that he was precious. A mommy’s heart has so much trouble dealing with this kind of loss and I feel your pain with you. Please know that you are being held in the Father’s arms and He feels your pain with you and is carrying you through this time. Your pictures are precious and you are right…she loved the camera! Lots of love and hugs being sent your way!!!
Becky

jessica says:

by chance i clicked on maddie’s smiling face in a march of dimes ad on a different blog. i was directed to your site and am now in tears reading of your heartbreaking sorrow. i know that sorry doesn’t help. and i know that there is nothing i can do to make you feel better. all i know is that i feel like i need to let you know that i have now been touched by maddie’s life and it only took a minute. just a random click of the mouse and i am forever changed by her story.

Laurie says:

I’ve just found you through Matt’s blog and have spent a great deal of time reading your blog. What a precious gift Maddie is. Her ginormous smile and ability to elude such a warm presence have given me such a sense of peace.

There are no words o describe how I feel about your loss, but I hope and pray that knowing you and your beautiful Maddie have truly lifted my spirit will provide a bit of comfort.

Your family and everyone who has been touched by Maddie’s passing will remain in my thoughts and prayers.

Nikki says:

A friend sent me your blog, and my heart is breaking for you and your husband. You are enduring a pain I can’t imagine.

My Addison was born 10 weeks and 1 day premature this past fall. I can relate to your NICU experience, as we spent 52 days on that journey. I am a volunteer for our local March of Dimes, and will be thinking of you and Maddie this Saturday at our walk.

I think of you and Mike and Maddie everyday. Sometimes, it strikes me as “odd” that a family of complete strangers wanders through my mind daily. Most of the time, it does not. It’s one Mom thinking of another Mom and the loss she’s dealing with and my heart just breaking.

I stared at the picture of the tank in her room for 10 minutes. I didn’t want to. It hurt my heart to. But, I couldn’t look away, either. I can understand why you didn’t want to see it go and why you couldn’t be there.

Kim says:

Although I have only just found your blog I have been touched by what you and Maddie have gone through. She really looks beautiful and happy in all the photos. God’s plan for Maddie to be here on earch was only for a short time I suppose. How wonderful you were to be chosen to be her parents and spend that precious time with her and love her as you did. Your heart is broken and you miss her so much. She will always be with you in your heart and you will see her again in heaven I am sure. Take care of each other.

I came across your blog because I had signed up with 5 minutes for Mom and they had an article about Maddie’s passing. I have visited your site every day. I have been praying for your family and you are in my thoughts daily. I have wanted to post a comment, but not sure what to say. I just want you to know that you and your family are in my prayers and you have touched my heart in ways that I cannot put into words. I am so, so sorry that you and your husband have had to endure this. I am glad you were blessed with her presence. But I am crushed that you had to experience the loss. May God bless you and keep you firmly in His comforting hands.

I’ll never forget when they came to take the hospital bed out of our home after my stepfather passed away (he battled cancer for nine months)….as much as I hated seeing him in that bed, seeing them tear down that bed and take it away was a punch to the gut, a hundred times over. That was before I was a mother…when I think of what you are going through now, which I think of every single day, I can honestly tell you my heart hurts in a way like never before for you guys.
My new favorite song is “Daughter” from the tribute video and every time I play it (on my hour commute to work), I see Maddie’s beautiful face.

Mary says:

I keep thinking I’ll have the perfect writing, the perfect phrases that will make you feel just one tiny bit better for just a split second. But I don’t, because really what is there to say that would make any of it any better? We’re sharing in your pain as much as we can; hopefully that helps lessen the burden. I’m so sorry for your loss of your and Mike’s wonderful Maddie Moo.

I am so sorry. I haven’t left a comment because, what do you say to someone who just lost their child? I haven’t followed long. I wish I had, but none the less, Maddie did touch my life. I have a 6 year old, and since reading your blog, I have started my own. I have been meaning to for a long time, but just never got around to it. You and Maddie have shown me that life is too precious to sit idle. I want to remember every moment of my son’s childhood for the rest of mine, and his life. Thank you, from every fiber of my being. Blessings to you and Mike.

Also, I love motorcycles, and here in Kansas City, MO, we have the largest Bikers for Babies ride in the country. This year, I ride for Maddie.

Jordy says:

Heather honey…. first of all I want you to feel a big tight strong HUG right now. If only you knew how much I’m hurting for you… every day I check your blog (twice a day) and every day I just pray and pray that your pain will somehow start to “numb” soon. I spoke to your dad yesterday for a while and I told him that you are definitely THE strongest person I have ever known. To go through this nightmare and still be able to write about it and share it with the world is absolutely incredible. I just wanted to tell you once again that i love you and that I am right there with you in my thoughts, every day through this very difficult road. Count on me, always!!! XOXO

Erica B says:

Being a hopeless blogoholic, I followed the yellow brick road from another blog to yours, and was mystified by this other-worldly beautiful creation that is your sweet daughter. Your photographs captured a boundless soul in it’s resolute springing to shed a body too fragile to contain it. Whatever your faith, believe this, God’s creation has no “undo” button. All He creates endures. She is here, around you, blossomed into the fullness and wholeness of the glorious angel we could only catch a glimpse of in photograph. Can you imagine that spirit set free from these earthly limitations? Our hearts ache at being forced to release all the hopes and dreams of a practical world and you pray that your memory remains sharp and clear because it seems it is all you have to hold onto, even when it is too painful to remember. Sadly, we are yet in our confinement to the world of feeling and thinking. Be comforted because your sweet angel is not “gone”, but transcended to the world of being and knowing. She will not take her old form again, as beautiful as it was, but she is there peeking in on you here from a place she wouldn’t leave for anything. If you look for her, you will find her, breathing soft kisses to you and scuttling you along in life. When your heart breaks at some human reminder of your loss, feel what there is to feel and pay tribute to her existence, as you have. But, also, live. Live, simply because she did. It seems she filled every moment of her life on this earth with indomitable spirit. Give her the gift of living out every second with your spirit as present and engaged as hers. May the love of God and humanity enfold you, support you, and sustain you.

Annie says:

I don’t blog, never have, in the shape of a mother there was a post and that’s how I discovered your blog. I’m from dominican republic and I have a baby, I don’t know you guys but everytime I read one of those post about Maddie, tears come along, in spanish we say “te acompano en tus sentimientos” wich will be I shared your feelings in other cases I don’t like saying that cause my pain will never be as bad as the person who’s suffering the lost but this time I think I can say it cause not only hurts my heart for Maddie but it hurts for my Maia too cause as I’m reading I put myself in your place, picture all in my mind and that’s when it really hurts, what can I do to help?

Lisa says:

Dear Heather and Mike,
I’m so terribly sorry that your beautiful, precious angel is gone. My daughter is a month younger than Maddie, and I’m weeping as I type this from having read your posts. I tried for a moment to put myself in your shoes, and it was too unbearable to even keep trying. I am so, so sorry. Maddie and you are in my thoughts and prayers.
Lisa

I stubbed my toe on that damn rocket more than once.
But still.
I wish it left your life under better circumstances.
Did you tell the medical supply place they are now proud owners of some of my toe flesh?

I’m very sorry for the loss of your sweet little girl. I spent last night looking through your blogs & watching the memorial video made for her. Needless to say, I was in tears. Tears for the fact that her precious life was cut short & tears for her family members left here without her.

I am an “angel mom” as well. I lost my 3yr old son 11/16/06 to Meningococcal Meningitis. So, sadly, I understand the horrible pain your going through.

She has that “full of life” look in her eyes just like my Landan did. So vibrate & made everyone extremely happy. Even though she was born premature it sounds like the end of her story was unexpected & unseen, as it was with my son.

I just wanted you to know that I’m thinking of you during this time, and will be thinking of you during the rough roads ahead. If you want to talk to someone to “understands” please feel free to email me.

thiskat says:

I saw your Twitpic of the purple monster, and went through your past photos there. I remember you said you were upset you didn’t get a picture of yourself with Maddie in that amazing shoot you did the weekend before she died. And then I saw this: http://twitpic.com/25pfm What a great photo. I can’t believe it’s been 2 weeks already. Thinking about you all the time.

As a mum to five boys I can not imagine what you are going through right now.
My oldest had a breathing problem when younger and had to have a sleeping monitor placed on him 24/7 for the first 12 months and he was amazing strong.
My heart goes out to you and your husband. You guys are one amazing family…..you are strong and such loving parents to share your gorgeous girl with the world. If I could place my arms around you and give you guys a hug I would. But seen as I am too far in distance know that my thoughts, prays and love is sent your way.
Maddie was the most beautiful girl and her smile lights up the world. Know that she will never be far from my thoughts.
I have never had a daughter and I never will……but your daughter makes the world a better place.
I will be buying purple and will be remembering Maddie.
Love, prays and thoughts sent your way.
Lisa xxxx

Heather, I don’t know you and you don’t know me. I am a follower of Matt’s blog and came to your story through his post. All I can say is that I too am a mama, and my mama heart is breaking for yours. I feel as if though your beautiful little girl has touched my heart in a very inexplicable way. She just radiated love. Beauty. Passion. I wish I could say or do something to take away the pain you and your husband must be enduring. I wish I knew how to help. I am a huge advocate of March of Dimes, having had two bedrests – the second one 18 weeks. I will donate in Maddie’s name. I know that won’t change your hurting heart. But her face will never leave my mind. All I can do is pray for you to get through the days and know that she has left a permanent mark on those who even just got to see her pictures. My heart breaks for you. Your daughter is a remarkable spirit.
With love and prayers,
Tricia and Family
Northern Virginiairishsamom@msn.com

Amy says:

I am thankful that your mother was able to be there for the pick up. You and Mike have been through so much.. it is good to let someone else do a few things so that you can focus on the everyday things… a walk, the dog, getting outside. You can do this…

i just want to hold your hand right now…just know that.
i look at videos of sweet little Maddie and my heart just plunges.
What a loss, what a magnificent loss…
I have had two pregnancy losses at 22 and 23 weeks – Emi and Daniella respectively. Daniella lived 3 and half hours. I left the hospital empty handed both times. Your story touches me so deeply because you got to take her home despite your difficult pregnancy and you both struggled and fought for her and she fought also…i don’t know what i am saying or where i am going so i’ll think i’ll stop. just know that you have one more person ‘out there’ that is devastated for you you and your husband…one more person that was touched so deeply by her sweet smile, that i feel like i lost her also.

Jill says:

Oh, Heather. I prayed for you and Mike and your families at mass this morning. You are in my thoughts every day. I am so sorry for you and wish there was some small way we could ease what you are going through.

Regina says:

I’m so sorry for your loss, she’s a beautiful Angel. I lost my grandson before we were even supposed to meet him at 23 & 1/2 weeks he was so tiny and frail and God had special plans for him, words could not explain anything or really help, but there is a special Angel for you, she’s the unexplained strength when you need it.
My sister said the same about her husbands oxygen tank, she wanted it gone but now she wishes she could stubb her toe on it again, she misses him bunches.
I hope in time a healing process can begin.
Thoughts, prayers and hugs
Regina

God Bless You. Since hearing of Maddie, my heart was truly touched and I signed up almost immediately to walk for the March of Dimes in my area and start collecting donations. You are a strong woman and I truly wish you and your family the very best in such trying times!

I came across some words the other day that have become my new favorite quote. I thought you might appreciate them too…

“The length of a life does not reflect the depth of the love shared between a parent and a child. From day one children give and receive love with grace. Their hearts are open to the possibilities and free of doubt and fear.”

I wish for you purple-filled days to remember the beauty of your daughter.

I am truly sorry for your loss. I can’t even begin to imagine what you and your family are going through. I came across your blog through Matt Logelin’s blog. I also now check yours everyday. (My son is battling some issues as well, and I also blog as a way for some release) I just want to you know, my thoughts are prayers are with you and the family. Your daughter is just beautiful.

PS. I feel the same way about the oxygen. I have the same feelings with my son’s oxygen.

I stumbled across your blog through Petroville. My heart breaks for you and your family. My best friend lost her 13 month old Daughter Ellie two years ago. Everything about Ellie was pink so now at sunset or sunrise when the sky looks bright pink we say that Ellie painted the sky pink for us. Now if I see a beautiful purple sky I will think of your Maddie. My heart breaks for you. Keep writing. My friend had a page where she reflected, screamed on-line, got pissed off or just remembered a special moment. It helped her heal. My heart aches for you.

Shashi says:

I have just started reading your blog, stumbled on it. I dont know if you believe in a life after death… I sure did not, being a die hard rationalist….till I had my daughter. Now I want to believe in it all. In an omnipotent entity that will take care of our babies in this world, and should the unthinkable happen that they will be loved and continue to exist in another plane. Why not ? its not like there is proof of it not being so. I chose to believe Maddie is somewhere where you cant see her but she can see you and is happy and wants to tell you “its ok Da Doo I am doing fine here and I love you”.

Jypsie says:

I’m so sorry for your loss I lost my 5 year old in a car accident 2 years ago and I don’t think anybody really can ever really forget about thier kids people that think so need to have kids to see what it feels like just when they leave for a sleepover good luck with coping just know shes always gona be with you